Surviving Multiple Chemical Sensitivity! Surviving Multiple Chemical Sensitivity!

My Mothers Story

Discussion started by acolon1015 5 years ago

Hello everyone. I found this site while searching over and over for things that may help my mothers health issues. So far I am blown away by the things I am learning, and how so many people are affected my this condition.

What we believed to be a sudden increase in my mothers allergic reaction, we now think is MCS. Since she started suffering from MCS my mother was intubated 5 times because she would have such trouble breathing that the doctors didn't think she'd be able to breath on her own. 2 months ago they decided to prevent further damage to her vocal cords, and give her easier access to oxygen and ventilators if necessary, they decided it would be best to put a trach in. This has been horribly traumatic for her, and me seeing her go through this. And still her attacks have continued. Not until searching the internest extensively ourselves have we realized this is not just an allergy induced asthma reaction, but MCS.

What boggles my mind is that after dozens of hospital stays, where at least 30 doctors have been involved in her case, how has no one been able to properly diagnose her? And more so, why is it so hard for her to get treatment without encountering multiple individuals that refuse to realize that when we say "No one can enter her room wearing cologne, perfume, scented lotions, scented detergents or deoderants.", it means NO!!!

Sorry, I'm done with my rambling rant.

We are only now trying to come up with a new treatment plan after researching all of this ourselves. It is so hard to find a doctor in our area that has any experience with this. The only one that seems to have true experience and success doesn't accept insurance, and since we're bankrupt already from the last year. I will keep everyone updated on her progress. Already I feel somewhat hopeful after reading the many posts on here. Thank you for sharing!

 

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Miche
Miche
You just need to find the right doctor. All the doctors who have treated your mum would have thought of MCS (or the denial of it as an illness) at least once. They know it exists. But it takes a brave man/woman to stand up against popular opinion and speak the truth; however, these doctors who believe us do exist. For me, it's been a doctor of environmental medicine and an immunologist specialist who have been helpful in diagnosis and suggestions - yet it is the information that I get from the community of MCS, EI, and chemically sensitive people that has helped me the most.

I recovered almost completely once, but did not appreciate it, and ended up sicker than before. This time when I recover, I'll hold onto it like gold!

I wish you and your mum luck and good health.

I'm a student and I blog about living like this at the-labyrinth.com

Also, I think you should look for some hospital guidelines that are for chemically sensitive patients. In Australia we have five states (3 of these now have guidelines for patients, so that is a positive).
5 years ago
marcus
marcus
Sadly nothing much in your story surprises me. The medical profession seem to be clowns, (although that is probably somewhat harsh given that they do do some good work), who seem to be in complete denial about anything out of their comfort zone.

They might just as well offer blue pill medical care and red pill medical care:

"Would you like treatment for conditions that actually exist, or just treatment for the conditions that we say exist"

I have hunted high and low for help, and little is forthcoming.

Where are you based?

I think in a recent survey the only things that had beenn found to help were prayer and acupressure.

I have actually started a course of acupuncture recently, and i feel that some headway is being made. However, I've had so many false dawns, I am not btting the house on it.

Good luck anyhow.
5 years ago

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